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Big Stats
Full Story Archive
This section is intended for use only on the main Stories page.
Anti-NMDR Encephalitis Lived Experience - Juliana's Story
Juliana talks about her lived experience of Anti-NMDR encephalitis which she had when she was just 14 years old and how her live changed as a result.
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Herpes Simplex Encephalitis Lived Experience - Joshua's Story
Joshua shares his experience of panic attacks, anxiety and fatigue as a result of his herpes simplex encephalitis diagnosis.
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Meningoencephalitis Lived Experience - Jim's Story
The type of encephalitis that I developed was one born of stress. It manifested itself as shingles, and instead of just causing a rash and impacting me physically, it raced up my spine and took my brain by force. Not just the temporal lobe, but also the lining of the brain too. No one can say why other than stress, and there is no single trigger point that can be identified at present. All that can be said is that my brain, my mind and who I once was had reached their breaking point.
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Meningoencephalitis Lived Experience - Jeremy's Story
Jeremy shares his story of waking from a 10 day coma to a diagnosis of amoebic meningoencephalitis, a type of infectious encephalitis.
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Viral Encephalitis - Janet's Story told by husband, Peter
Janet's husband, Peter, recalls their experience of encephalitis when Janet was diagnosed in 2007 with viral encephalitis. She later passed away in 2018.
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Limbic Autoimmune Encephalitis Lived Experience - James' Story
Sue talks about her experience of James being diagnosed with limbic autoimmune encephalitis and how there were no warning signs. Read about his diagnosis and recovery.
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Autoimmune Encephalitis Lived Experience - Jackie's Story
This is the article that Jackie wrote about her experience of encephalitis for The Gavel, the quarterly magazine of the North Dakota State Bar Association. She talks about her diagnosis or autoimmune encephalitis.
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Viral Encephalitis - Nicholas' story told by mum, Sarah
At the age of 16 years, Nicholas was struck down by a completely random virus, which caused encephalitis and subsequent brain damage. He was in intensive care for a long while and had to learn to walk, talk, eat, read, and basically live, all over again. Nicholas’ mental age never fully recovered, and he became the perpetual teenager in his thoughts and actions.
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Anti-NMDAR Encephalitis Lived Experience - Hayleigh's Story
Hayleigh, from London, became poorly with Anti-NMDAR encephalitis towards the end of 2012. As part of her degree at the University of West London in Ealing, she filmed a documentary about her story, speaking to family members, including her twin, Laura, her doctors as well as talking about her own experiences.
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Anti-NMDAR Encephalitis Lived Experience - Hannah's Story
I was admitted into hospital on the 31st August, 2017, just twelve days after my 21st birthday. This was after spending 36 hours in a psychiatric unit where I was diagnosed with (initially) depression and anxiety. Then they decided to add in borderline psychosis, at that stage they had written me off and didn’t think to listen to how I was actually feeling which was scared, alone and not mentally sick.
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Autoimmune Encephalitis Lived Experience - George's Story
George was diagnosed with autoimmune encephalitis in April 2021 after 9 months of living with the condition. He writes about his illness, diagnosis, the impact of his encephalitis and his ongoing treatment.
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ADEM Lived Experience - Erin's Story as told by mum, Michelle
Michelle shares her story her daughter's diagnosis of acute disseminated encephalomyelitis (ADEM) and cerebellitis secondary to influenza A virus. Five year old Erin and her brother both had flu like symptoms. Unfortunately, they became far worse for Erin.
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Viral Encephalitis Lived Experience - Elissa's Story
Elissa shares the importance of sleep, mental health and her family and friends in her ongoing recovery from viral encephalitis. Diagnosed in 2019, Elissa talks about the struggle she went though in hospital and the relapses she has experienced.
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Autoimmune Encephalitis Lived Experience - Elisabeth's Story
Elisabeth shares her experience of being diagnosed with autoimmune encephalitis. The confusion it caused and how and how she spent Christmas, New Year and her 20th birthday in hospital.
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Autoimmune Encephalitis Dave's Story - Part Two
Part 2, February 2018 (aged 68): An update on my progress after I fell ill with autoimmune encephalitis in January 2016. General I feel that I have come a long way since my illness in January 2016 and I am sure my family and friends would agree on this. Some days I feel 100%, […]
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Autoimmune Encephalitis Dave's Story - Part One
Part 1: January 2016 (aged 66) I have no recollection whatsoever of the initial stages of contracting encephalitis, nor the early stages of my diagnosis and treatment. Therefore, the first part of ‘my story’ has been compiled from the experiences of my family and friends, together with my medical team. The first sign that there […]
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Herpes Simplex Encephalitis Lived Experience - Corinna's Story
The HSV encephalitis had caused the amygdala to dysfunction, sending me on an unpredictable emotional rollercoaster ride. When I first arrived at the emergency department, doctors couldn’t find a clear cause to my symptoms of feeling disoriented, dizzy, nauseous and suffering a severe headache.
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ADEM Lived Experience - Charlie's Story
However, on the morning of the 6th February, he woke at 4am, told us he felt sick and rushed to the toilet and immediately vomited. He felt hot to the touch and his temperature was over 40. This is a high temperature, but we were used to Charlie having fevers as he had suffered from recurring tonsillitis for six years before they were finally removed in July 2018.
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Viral Encephalitis Lived Experience - Paula's Story
This is Paula's Viral Encephalitis Lived Experience. She discusses how encephalitis affected her childhood and how she is doing now.
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Anti-NMDAR Encephalitis Lived Experience - Ger's Story
Ger tells the story of his three experiences with Anti-NMDAR encephalitis and how it affected the course of his life.
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Herpes Simplex Virus Encephalitis Lived Experience - Audrey's Story
Audrey discusses herpes simplex virus encephalitis lived experience, including the early signs of her illness and long term effects encephalitis has had on her life after being diagnosed at age 58.
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Anti-NMDAR - Cerys' Story told by mum, Kerry
We called an ambulance and she was fully recovered by the time they arrived with no recollection of what had happened. She was taken to A&E where a CAT scan and observations all came back clear. They even considered sending her home because she was alert and well. She was only kept in because I mentioned the changes in her over the past week or so.
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Herpes Simplex Encephalitis Lived Experience - Bruno's Story
My encephalitis started suddenly from one day to the next. I was 16 at the time, and I was half way through my lunch hour when it happened. All of a sudden and without any warning, I felt very dizzy and lost all sense of balance. I spent a good deal of the afternoon with friends in the school library sitting down not being able to move much.
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Herpes Simplex Encephalitis Lived Experience - Brie's Story
In November 2019 I started to feel run down. Initial diagnosis was an ear infection. However, after a week of antibiotics and steroids I wasn’t any better. I was lethargic, sleeping for hours of the day. I began to become unsteady on my feet. The GP added in another antibiotic and some more steroid ear drops. He still felt it was a bad ear infection and advised me to continue.
Read StoryFull Event Archive
This section is intended for use only on the main Events page.
My Brain & Medicine 2026
My Brain & Medicine 2026 – Registration is now open FREE virtual (online) event Join us online for a patient event and listen to professionals and lived experience speakers. The presentations are aimed at patients, caregivers and family members with an interest with encephalitis. Starting on Monday, April 27, 2026 at 1:00PM BST, this event will […]
Edinburgh Marathon Festival
The Edinburgh Marathon Festival offers a varied programme of events across the weekend, with kids races, 5km, 10km, half marathon and full marathon, including the Hairy Haggis Team Relay option for 4 runners.
Family Resilience Day
Family Resilience Event 28-30 May 2026 Yorkshire Wildlife Park, Doncaster, UK This is an in-person only event aimed at children (up to 16-year-old) and their families who experienced encephalitis and its aftereffects. It is an opportunity for both children and parents to connect with each other and share experiences in a safe environment. Schedule […]
Great North Run
The AJ Bell Great North Run is the world’s biggest half marathon, with 60,000 runners taking on the 13.1 mile route from Newcastle to South Shields. Register your interest for 2026!
My Brain & Medicine Birmingham, England 2026
My Brain & Medicine (MB&M) is an in-person event only. We would love you to join us in Birmingham, England on Friday 9 October 2026. This event is for anyone who wants to listen to the experiences of people who have been directly or indirectly affected by encephalitis and learn more about the after-effects. There […]
Encephalitis 2026 - Registration
7th and 8th December 2026 Royal College of Physicians (RCP), London and virtually (Please note the attendance is both in-person and virtual. Those who register will be able to watch the Conference sessions on demand for 60 days after the event) Registrations are now open! (in-person and virtual tickets are available) Book your tickets here […]
Ultra Challenge - Walk, Jog, or Run
Whether along stunning coastlines, or trails through wonderful countryside, your Ultra Challenge® will be unforgettable. Walk, jog or run - take on a 10km, 25km, 50km 75km or even a 100km Ultra Challenge.
UK Challenges - Run, Tough Mudder, Bungee
Want to run your first 5k? Or how about the challenge of a marathon or obstacle race? There are plenty of challenge options in the UK to support us!
Global Running Challenges
Sight-seeing and running combine brilliantly for these global challenge events. Run through must-see cities and past iconic landmarks whilst supporting Encephalitis International!
Cycling Challenges
From short cycles to epic multi-day international rides, there is a huge range of cycling challenges to choose from. Get on your bike and support Encephalitis International!
SuperHalfs Series
The SuperHalfs Series brings together six epic destination half marathons which runners complete to secure their SuperMedal and a place in the SuperHalfs Hall of Fame. The events take place in Berlin, Cardiff, Copenhagen, Lisbon, Prague and Valencia. What an awesome challenge to take on in support of Encephalitis International!
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